Tuesday, April 3, 2012

More Miracles!!

WHOA BABY!!! It's a good thing that blessings don't run out because it feels like we're standing mouths wide open in front of an open fire hydrant of them today! (how's that for visualization!)

Here's what's happening:
  • As you all know by now if you're following his Facebook Page , our little man extubated HIMSELF on April Fools Day- no joke!
  • He's been doing GREAT off the vent for the last two days. Very few "fits" like he had been having previously off the vent and has required very little extra drugs.
  • The weaning of his methadone is going swimmingly with the help of clonadine. 
  • And all in all, lately he's just seemed like a happier baby. 

THEN today before Lindsey got to the hospital (she still with him all day, every day) she called to check in on him and they told her they had done another echo to check on his pulmonary hypertension. Keep in mind, we had no idea they were going to be doing this and we were still waiting on the results from the head ultra sound they did on Monday to check on the blood clots in his head. 

The nerves set in. If you've been following his story you know this, but just to recap for our newest friends:
  • A lot of babies with congenital diaphragmatic hernia lose their battles with CDH because their lungs don't oxygenate their blood properly, thus forcing the heart to work too hard and eventually give out (also known as Persistent Pulmonary Hypertension). 
  • Killian's PH has always been moderate-severe.
  • It actually got worse one week and a nurse practitioner (who we love and trust) told us that she's never seen a baby's PH get worse and then actually get better. 
  • Well, Killian proved them wrong a few weeks back when his DID get better! 
  • But it was only slightly improved...still moderate-severe. 
  • He's also had pretty serious blood clots in his head since he was on ECMO. 
  • Today Killian's PH came back on this echo as MILD...THAT'S RIGHT...MILD!!!!!!!!! That's no "slight" improvement folks. That is straight up miraculous! 
  • Bloods clots? Yup, they're resolving!!!!!!!!!!!!!!!!!!!! 
We are just beside ourselves with this news! After shedding a few tears and getting rid of the head to toe goosebumps I told Lindsey that I can't wait to -for years to come- share Killian's story with other CDH mommies and daddies. Killian's life, all three months of is thus far, is a true testament that miracles do happen. He has literally proven almost every doctor wrong. Take that 5%! 

We still have a very very long road, but this sure is a good pick-me-up for the journey ahead. And here's another pick-me-up...video of our sweet boy checking out his mobile, with no breathing tube and apparently working his legs out for this marathon he's committed to winning!

TWO DAYS TIL NASHVILLE!!! Love you all! Really truly mean that. Don't know where we'd be in all of this without you.

Hugs from Florida,
Aunt Layna  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.


More about CDH from CHD Support:
CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.


  1. God Bless You Precious Miracle, Little Warrior Man!

    God Bless Your Amazing Momma, Auntie & All Your Wonderful Family!

    May the Lord Our God continue to shower you all with his grace & mercy.

    Keep showing CDH Your "Tude"!

    Blessings Always,

    Maria ~ Nonna to Angel CHERUB Liam ("The Lion") Anthony Hunt - Vermont

  2. We love you Maria! Thanks as always for rooting us on! Liam is up there helping us we just know it!